Jeff & Becky's journey ANY REFERRALS FOR THE RALEIGH NC AREA?

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2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 10/12/2007 6:43 PM (GMT -7)   
Hey everyone, I know this is long, please bear with me

Haven't posted in a while - been a tough summer. We've definitely been struggling as a couple finding better ways to communicate through all this, but we're making headway. My husband is the type that doesn't worry too much and thinks things will get better on their own, so when it came to ed therapy I became the "nag". I'm the researcher in the family and would try to impart information bu finally gave up. I am so emotionally drained after losing my dad earlier this year, losing my relationship with my mom because of her bitterness towards my dad over a divorce 30 years ago, and then feeling like I'd lost that connection with Jeff. To top it off my new Marine left for Iraq 2 weeks ago.

So we've gone through lots of fights and tears but each time have opened up more, and my husband is doing much better sharing his fears and being proactive. The problem is we haven't felt comfortable with any of the dr.s we've seen in working through the ed. They are so flippant, and somewhat ill informed. I get so frustrated when I come on this forum and read the steps others are taking, or when I do research on my own.

A brief history and update is this: lap. radical prost. 10/17/06. Prior to that, NO ed. Jeff could reach full erection in a matter of seconds. No urinating problems. (He just turned 46). Both nerve bundles spared - the dr. indicated the surgery went very well in that respect. Off pads within 2 months. When we first asked the doc about using the pump he discouraged the idea (this was a young dr.) At 6 wks prescribed viagra. We tried viagra, cialis, and levitra with no measurable success and horrible side effects. Dr. prescribed muse, again horrible pain. So he finally ordered a pump,in March, per our request. Jeff used the pump faithfully, we had sex once with it, requiring like 3 bands - not too good. Plus Jeff started having horrible pain during subsequent orgasm, so I think he pulled something.

So we kind of eased back in to things slowly. He started feeling better and I nagged him in to injections. Our dr. had moved so we decided to try another at a different practice, since our dr.s office didn't seem too proactive . New dr. told us there was no difference between caverject, bimix or trimix, gave us caverject knowing the probs we had with muse, gave us a needle and sent us on our way to self inject the 1st time at home. The needle was not diabetic, so you can imagine my husband was not ready for sex - he couldn't even get the needle in until the 3rd try. I was so angry because I new what he told us about the medicine was incorrect.

Went back to original dr.s office, got a new guy who is like Roger Rabbit on speed. He told us we were going to work at getting Jeff a rock hard erection. That sounded good to me. We came back with a bimix solution for him to administer for the first injection. He was having Jeff hold it while he guided his hand and then WHAM he jammed it into his penis - I jumped and so did Jeff. It was horrible. He came back in to the room after 20 minutes and was all excited about the erection (which was about 1/3 normal). That was very depressing, using .5cc of the bimix. But he assured us with practice and in a relaxed atmosphere it would be better. Hmmm.

We went home and had miserable sex because Jeff was in so much pain - but this time more from being somewhat erect finally, not the ache from the medicine. Then because of lots of scheduling things, and because of Jeff's fear of the needle after these crummy experiences, we didn't try again until 2 weeks ago. In between time Jeff kept pumping and we have been finding more & more response on his own, with enough stimulaiton, so that's encouraging - nothing workable, but definite improvement. So 2 weeks ago Jeff tried, shot much more successful, and enough erection for penetration, but still probably about 1/2 - 2/3 size. But that's okay, we'll practice. Tried tonight, shooting on oposite side, and immediate horrible pain, some erection, couldn't even climax because of the pain - maybe he hit something he shouldn't have?

So we are both so discouraged (I know it's only been a year, and we are so thankful for his PSAs). But I told Jeff tonight I didn't feel comfortable with Dr. Roger Rabbit, and he said he felt like we were all alone. I feel like our drs really focused on the cancer, which is the most important thing, but are so unconcernec about the ed. It's like because he's young and healthy he'll bounce back, so what's the hurry? Even this last dr. told us lots of people wait longer to have the shots, whereas I've read many articles where some dr.s think the earlier the better, it promotes healing.

I just needed to vent, but I also need to know if anyone is seeing dr.s in our area who they feel are really on their side, working as a team just as diligantly on the ed as the cancer. I've heard Duke and I think UNC mentioned - they are very close to us. We are right on the edge of Raleigh..

Any help would be so appreciated. And by the way, my son is doing great in Iraq. He gets to call home at least twice a week, but we miss him so.

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


Hagrid
Regular Member


Date Joined Sep 2007
Total Posts : 60
   Posted 10/12/2007 7:20 PM (GMT -7)   
First, my thanks for your son's service. From the bottom of my heart.

ED can be devistating for a man, and it sounds like your doctors have not helped. I believe that when you find the RIGHT doc, it will help tremendously.

Does your husband read the posts here? If so, he would see where other guys (AND their loved ones) have tried various methods, and almost all have found a method that works for them. Just keep trying.

Our prayers are with you, and your son.
Age: 57 (49 when diagnosed)
PSA 100+ 3/1999
Biopsy -positive, both nodes 03/1999
Bone Scan and CAT scan negative 4/1999
Radical prostatectomy and bladder neck removed 04/19/1999
HT - 05/1999 (Lupron every 3 months for 9 months)
RT - 6/1999
PSA 0.0-0.2 until 2001
Casodex 150mg 2001 until 2006
Casodex 100mg 2006-present
PSA 0.4-0.6 2001-2007
 


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 10/12/2007 7:56 PM (GMT -7)   
Thanks, Haggrid. My husband isn't on the computer much, except for FAntasy Football! But I do keep him informed about the things I learn on this site and others. I do believe once we find the right dr. we will see improvement - not just physically, but emotionally, too. Hopefully someone will know a good dr. in Raleigh -

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


M. Kat
Veteran Member


Date Joined Jul 2006
Total Posts : 715
   Posted 10/12/2007 7:57 PM (GMT -7)   
hi Becky, our prayers are with your son that he will stay safe. God bless him!! and bless you, too, for continuing with this journey. I agree that once you find the right doctor, you will be on your way to better recovery from ED. I'm sorry I don't know of anyone in NC but I know there are others here who can help you. I understand your frustration - even though things are better here, I get tired of Jeff always looking "down there" every time we fool around, and then wants to get right into intercourse once it's hard because if we fool around for too long, the erection goes away and doesn't come back (at least not any time soon). but like you, I'm glad the cancer is gone and try to look at the other sides of life. Take care of yourself!! kat
Husband Jeff 56 years old diagnosed July 27, 2006
PSA 6.5, 2 positive areas in biopsy, Gleason 3+3=6
Radical Retropubic Prostatectomy August 30, 2006
pathology report - all clear - cancer gone
1st post-surgery PSA test <0.1, 2nd post-surgery PSA test <0.1, 3rd PSA <0.1
no more pads Oct 12, 2006
first "real" erection with use of pump 12/16/06
3/07 - occasional dribbles and erections with Cialis and pump
8/07 - 1 yr PSA <0.1
9/1/07 - achieved erection with Viagra - no pump!


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 10/12/2007 9:04 PM (GMT -7)   

Becky and Jeff:

Just wanted to say "thank you" for raising a son who is willing to serve his country - he is a great honor to your family and we will pray for his safe tour of duty.

Dutch


kdnole
Regular Member


Date Joined Jun 2007
Total Posts : 152
   Posted 10/13/2007 8:07 AM (GMT -7)   
2 busy, email me I live in Raleigh and can suggest who I am using.
Age 44
PSA 4.8
Gleason 3+3=6
T2
Biopsy - 3 of 12 (2@20% / 1@80%
Da Vinci 7/31/07 @ Duke
2.5 hr. surgery, released from Duke with in 14 hrs.
Saved both nerve bundles. 
Foley out 8/10/08
Positive Pathology Report 
Near left side nerve bundle
New Gleason 7
Oncology visit in the near future for radiation
Back to work 3 weeks following surgery - Sales
 
9/13/07 - 1 Post PSA Undetectable less than 0.1 
 
9/17/07 - Pad Free! 


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 10/13/2007 3:21 PM (GMT -7)   
Thanks for the encouragement everyone, and the good wishes for our son - I will pass them on. He is an awesome young man and we feel so blessed. He has such a great attitude and strong faith, and that makes it easier on us. Thank you for your prayers -

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%


creed_three
Veteran Member


Date Joined Jan 2007
Total Posts : 762
   Posted 10/13/2007 6:57 PM (GMT -7)   
Hello Bec,

I echo the words and prayers of others about your courageous son, and also of course, your courageous husband. My father is a retired Army Major (now 74 years) researching and writing his own memoires at the moment. I will pray for your son's safety, and his faith to continue to sustain him.

Re. your post, it must be almost impossible to be negotiating this additional concern with so much on your mind and outside your control. It is a very difficult thing when the technical aspects of ED over-ride the intimate aspects, and I wish I had the answers for you. If I do discover any I will let you know! I think its good that you can tell your hubby why you feel uncomfortable with "Roger" - the responses to my (strange experience) post recently may assist also, as other people have experienced this discomfort with doctors too.

The problem is the dependence on finding medical partners (doctors) to assist, not control - a pity!! I found I tended to withdraw into myself as this issue is too hard for us to personally discuss with anyone at all - doctors included, all family and no friends. Therefore, hopefully others may assist us all . cheers, Lana
Creed_three
Lana posting for husband CJ (49 years). First PSA 3.5 (Nov 06). Open Radical Prostatectomy on Tuesday 17th April 2007. Gleeson 3 + 4 = 7. Confined to prostate. PSA 0.01 (June 07).


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 10/13/2007 8:38 PM (GMT -7)   

Dear Becky, Jeff, & Loved Ones,

Just a little note to let you know our thoughts are with you... Keeping you close in prayer. 

Our special prayers reach far ~ to your son. 

In Friendship ~ Lee & Buddy

“God Bless You”

 

 It's a little prayer  ~  "God Bless You"  ...but it means so much each day,

It means may angels guard you and guide you on your way.


mama bluebird - Lee & Buddy… from North Carolina

 

v          We invite you to visit our personal thread:  Click Here:  “Our Journey” ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

3rd PSA 08-07-2007 Less than 0.1 Non-Detectable :)


2busymom
Regular Member


Date Joined Nov 2006
Total Posts : 118
   Posted 10/13/2007 9:12 PM (GMT -7)   
Thank you both so much for your prayers for my son. I know they are keeping him focused and strong. Lana, I had read your post the other day and could really relate to your frustration with your dr. Earlier this year when my father was battling a rare, horrifically painful cancer we had to fight so hard for him to get proper care - and by that I mean not just focusin on killing the tumor, but also on his nutrition, and monitoring the other areas of cancer. THis was not done until too late, and was a prognosis of over a year was shortened to 5 months because he was not able to keep his strength up. And this was at a top universtiry in Los Angeles. So I've done much more research and asked a lot more ?'s of our dr.s, and I've been amazed at their lack of knowledge on research and ed medications. When I told our 2nd dr. that I had heard that some people had problems with caverject and that I had read about someone on this site's experience with bimix instead (Tamu) he actually said (Well that guys not telling th truth, because it's all the same ingredient". He lost me then. I'm thinking, why would anyone in our positions decide to make up a story about their medication? And if they're no different, why is one bi-mix indicating 2 ingredients, and another tri-mix, indicating 3? Obviously the bi is missing at least ONE ingredient! I have learned more medically from this site and from surfing theweb than we have from any of our dr.s, and it shouldn't be that. I understand that they may not be able to provid ethe emotional support we can find here, but they should certainly be able to inform us about the medical stuff.

Enough said. I am very sorry you don't have anyone to share with - we are limited, but have a few people. I am able to be really honest with my sister, but it makes Jeff feel uncomfortable. He has shared some with our pastor, who is one of his best friends, but he's only recently felt more comfortable doing that. Is there a support group in your area where you might find encouragement?. It's so vulnerable and personal. And I know I've often felt guilty that the sex part is too important to me - like we're shallow, or that we obviously must've been using it in place of good communication, so now we struggle to express ourselves intimately. Not like we were having sex all the time before the surgery - but you really want what you can't have! I am so glad for this forum where we can be so blunt - and I love the personal, humerous spin some of the guys throw in to their stories. I just have to laugh out loud at some of the terms they use.

I am glad you have a surgeon suporting you - hopefully when you talk to your gp it will be straightend out. Please keep us osted on how that turns out -

bec
husband Jeff 45 years old, diagnosed 8/25/06
PSA 2.1, 2 of 12 samples at 3% & 4%, involving 1 side of prostate
Gleason 3+3=6 in both samples
laparoscopic radical prost. 10/17/06
cancer in both sides of prostate, positive in one area of margin
first PSA results 1/07 <0.01%

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